Five things I wish parents knew

By Dr. Peter Rumney

I’ve been asked to write a brief article to parents who are living with and supporting children with disabilities. As a pediatrician who’s worked at Holland Bloorview in its many forms and structures for over 25 years, I’ve had the privilege of meeting and working with many families and many children with disabilities. I’ve also had my own personal experience within my family with children and relatives with disabilities. Here are five things I’d like to convey to parents in the hope of strengthening the relationship between us. Thank you, Peter

1. We’re parents and family members, too

Staff who work here are parents and family members, too. We’re trying to be as objective, supportive and clear as possible in working with you and with your child and with the issues and challenges your family is facing. We also feel for you with the struggles, the frustrations and the sorrows as well as the celebrations that come with having a family member with significant disability. We may not be able to fully understand the specifics of your and your child’s situation, but we have worked through many situations with similar challenges with other families, and we may even have lived through these very painful issues in our own family.

Personally as a pediatrician, supporting families through the rehab process can be the most frustrating and heart-wrenching experience as well as the most liberating and invigorating. We do get to share in the celebrations and the progress of your child. More importantly, we get to know, appreciate and love your child’s personality, resilience and joie de vivre.

2. We tell the truth

The second key point is that we tell the truth. We tell the truth to you and to your family members. Our biggest frustration is that in many cases we don’t have more information to share with you about your child and his or her future. We don’t always have the specifics about how far your child will go, how much recovery will be seen, and how the specific disease process or challenge is going to affect your child—and you—in the areas of your child’s function and development in all facets of life.

Through experience, we have learned that telling the truth is the easiest, most effective way of communicating. It is the most ethical way to communicate with you and your child. Providing information that is age-appropriate and accurate to your child when he or she asks is the most effective way to help them understand what’s happening, deal with what’s happening, and be able to progress, move on and work through the challenges over the long term.

Children are incredibly attuned to what is going on around them. They’re very astute. They know when we’re trying to hide things from them and their imagination of what we’re hiding, or not telling them, is always more dramatic, fearful and terrifying than the truth. Knowing that you as parents are sharing with them the reality of the situation helps your children understand that you are there for them in the hard times as well as the good times.

We have also learned, through much experience, that keeping information from a child doesn’t protect or support the child, which is what some parents hope. In many cases where parents withhold information, we see greater challenges and frustrations for the child and family members over time. To quote ancient wisdom: “Telling the truth does indeed help set you free.”

3. Please don’t use health workers as threats to your child

Throughout my pediatric training I’ve heard young parents tell their children: “If you don’t behave, I’m going to tell the doctor to give you a needle.” They were, in essence, threatening to punish their child. This sets the child up to see doctors, nurses and health-care providers as punitive and frightening characters who are painful to deal with.

We do sometimes have to do things that are painful and uncomfortable in order to help your child. We’re striving in every way possible to help children deal effectively with the pain that comes with therapy and other interventions. We do this with techniques that distract children or help to minimize their anxiety and fear. We try to minimize the pain and discomfort of the procedure through medication and application of cooling packs. Even the simple provision of sugar and water to infants has been proven to be incredibly helpful in minimizing pain and discomfort.

Please help us make the challenging and difficult parts of therapy as pain-free as possible, and we’ll help you in any way we can in guiding your children with respect to behaviour, communication and choices as they grow and mature.

4. Understand that rehab is not a simple exercise process

What we’re endeavouring to do is find the best techniques possible to help your child’s brain develop, recover, adapt, change and learn new skills, strategies and techniques. The brain is still a very confusing and complex system of cells and networks that we’re far from truly comprehending. We know that the things that help with brain development are the basic tools of health and wellness. These include good nutrition, good stimulation, good rest and the guidance of movement in a positive way that reinforces healthy patterns as much as possible.

However, the brain does not develop as easily as a muscle develops. Pushing more therapy, more repetitions, more time, does not necessarily improve either the quality or the speed of the development and recovery. It is this challenge that helps us decide how often therapy needs to be administered, how intensive it needs to be and for how long. We come to this decision by looking to the scientific literature, following the experts in the field, and evaluating the outcomes of therapy as objectively and reliably as possible.

What we do know is that we as humans learn by doing things and experiencing things. We learn best in the environment where we need to do everyday activities. This means that the place to do those activities is back in the community as much as possible: in your school, in your home, in the daycare, in the community centre, which is where these activities are the stuff of life. Our initial intervention in the clinic or hospital is the first step to launch your child back into that home environment. This is the ultimate goal. We want them to be there with you, their friends and their classmates. We want them to be living, learning, striving and maturing so that they can truly celebrate and thrive.

5. Balance is everything

Finally, the key thing—and the hardest—for all parents, therapists, health-care providers and people in the community, is how do we find the proper balance in our lives? What is that best balance for you, your family and your child? What is the best balance of therapy and relaxation? Spending time with other family members, children and friends in ways that allow you and your child to relax, decompress and enjoy is known as ‘recreation’—in essence, recreating ourselves so that we can go back and do the hard, painful, challenging things that sap our energy and test our hope and our strength.

I was taught by a very wise and experienced teacher that as humans we do all things in groups and we do things best as humans in groups. We grow best in families and in communities. We celebrate in groups, we mourn in groups, we learn in communities of people. We need to foster these ties and interdependencies with friends and family and the wider community. We need each other. Strong connections to our families, faith groups, friends and neighbours help us deal with the challenges that life gives us. These ties help us overcome the hurdles that are inevitable in each of our paths. So, take time to appreciate and build those relationships around you, so that they are there for you in the good times, as well as the bad.

I hope that these simple thoughts are helpful and reassure you that, as the Canadian sage Red Green has said: “We’re all in this together, and we’re pulling for you.”

Dr. Peter Rumney is physician director of Rehabilitation and Complex Continuing Care at Holland Bloorview and an expert in acquired brain injury in children.